Living with Bone Mets diagnosis - SHARE Metastatic ...

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Living with Bone Mets diagnosis

Hi everyone, I'm a newly diagnosed Bone Mets patient and am finding the articles on here so helpful. I had BC in 2016 and after battling with severe chest and back pain all year I finally got a doctor to do a CT scan and bone scan where they picked up mets in my sternum, ribs and spine. Sternum is fractured and completely eroded which is pretty scary. I am battling with my support structure (family) because after they initially thought I was going to die imminently, knowing I am going to get treatment they're now acting like everything is fine and there is nothing wrong at all. I still feel like i have to live with this over my head forever now which is ptetty stressful. I'm in no way being pessimistic just realistic. Has anyone else experienced this? Also battling with hectic pain so what medications have you been given for pain relief?

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Hi there

I’m mainly bone mets with a fractured vertebrae..small lung and liver nodule

I know what you mean...I was fussed over after mbc diagnosis...people bringing flowers gifts etc....now a year later nobody seems to give a hoot as I’m still around

Don’t misunderstand me...I hate being fussed over as I’m fiercely independent but now I sometimes think nobody cares...I think we can be over sensitive sometimes as we have to live with it daily..for ever!!!... people forget and life carries on

I prefer to be treated as normal though than as an ill person who is at deaths door...

I take pain relief all the time and have tried most types of pain meds from morphine slow and fast release to otc meds

I’m quite active..ride my horse and like to walk so I can’t function without pain meds

However the side effects of the opiates aren’t nice..I find constipation the worst so I try to manage with cocodamol 30/500 together with high dose of ibuprofen..I rest if pain comes on

I also take CBD oil capsules and turmeric and glucosamine...have an infrared sauna which I sit in now and then..it’s boring though

Good luck with everything..stay with us on here as nobody can possibly understand what we go through day after day

Barb xx

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Thank you so much for the reply. It helps so much to talk to people going through the same thing as others really don't get it. I'm also super independent and hate being looked at with pity or have people feeling sorry for me but somewhere in between that and celebrating with champagne because "I'm fine" would be good :-)

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When I was newly diagnosed my husband started telling people about me...folks like bloke in our local paper shop and vague acquaintances of his...I was furious and told him off

I don’t ever disclose my condition to people but I know the grapevine had probably passed it around

If anyone asks how I am I just say fine how are you and change the subject

I avoid my neighbor who always gives me pitying looks and says you poor thing etc which really annoys me but maybe I’m being uncharitable

It’s a hard road to tread but we will do it!!!!

Barb xx

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Only 4 people know of my condition: 3 close friends who I swore with threats to keep their mouths shut, and one person with whom I have regular social contact (a weekly bridge game) so I don't have to tap dance if I have to cancel a game when I'm not feeling well - which fortunately hasn't happened often. I want to avoid just what you mentioned: the pitying looks and sad eyes or stupid comments. That would make me nuts! I use this forum to read and comment...this is my support group.

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South side, I am the same way! My husband, doctor, lawyer and accountant are the only ones that know 😃I find my

Life has remained more normal because of it.😃

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Home, I never thought of it that way. It does allow me to feel more normal without sad looks from my friends all the time reminding me that I have cancer.

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Your story is similar to mine, especially the family reaction. It made me smile. I want life to continue as normal and I definitely don't want anyone hovering around expecting me to drop down, but a little understanding would be nice :-)

There are 4 adults living in our home but I've always done the housework and garden, and despite requests for help that has continued. And I don't have the energy to make it an issue. I now struggle with some of the heavier jobs like moving furniture to clean beneath and changing beds. I'd really love someone just to recognise that things aren't being done and instead of commenting just do it 😊 I know if I had a major strop they probably would assist for a few weeks but I don't want to go back to them thinking that I'm not going to last the week. It is frustrating, but in a way I'm glad they don't get it. I wouldn't want them feeling like they were living under this sword of Damocles too.

I have widespread bone mets and was in a lot of pain when I was first diagnosed with mbc over a year ago. I couldn't even bend to put my underwear on and had to use a ruler to get dressed! but I had some radiation on my spine and since getting settled on treatment the pain has significantly reduced, and most of the time I am pain free now. If I get run down or dehydrated it returns, so I've learnt the importance of pacing myself. I just take the full dose of paracetamol and that takes the edge off it.

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Omg Julie...just tell them that you’re not doing heavy housework any more....end of!!

Sorry but I’m a bossy britches and you’re maybe more fussy about having a very clean house...whereas I’m not...in fact before mbc my husband said my horses stable was cleaner than my house!!!...a gross exaggeration I might add..I told him to do it himself if he was that bothered !...to be fair he does everything now...shopping cooking housework etc...I do what I feel like..put a wash on...load dishwasher...but to me these things aren’t important and I would resent anyone expecting me to do them

Sorry ranting but that’s me...hardbound feminist that I am!!

Barb xx

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😂😂 I tried that - I actually went on a housework strike for 6 weeks and you should have seen the state of the house. It was like living in student accommodation with a bad landlord! And I was the only one who noticed that the bed sheets had walked to the washing machine of their own accord! I've come to the conclusion that they just don't see it or smell it or get stressed by it.

Though my husband did buy a new robotic vacuum cleaner as he thought the old one wasn't coping as well!!

I'm not house proud and I would have been less bothered if the visitors (or the last of the summer wine crew as I think of them) my husband entertains with coffee and biscuits during the day when I'm at work hadn't started making comments! I tried to ban visitors but that got ignored.

I have started fantasizing about a little one bed flat, just big enough for me and the dogs and no forwarding address! 😁

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Yes I feel like running away sometimes!!! Maybe a mobile home with a bit of land for the fur babies

Barb xx

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Sounds perfect! 😊 Jxx

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Julie, you are funny! Thanks for the laughs you gave me today.

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thanks, glad I made you smile 😁

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Welcome to us💕 sorry you have had to join.

I have spine, rib and lung Mets. I had pain in my spine a while and had radiation dec 2017. It helped great deal. Still on faslodex, ibrance and xygeva. If pain becomes too much in one area I can do radiation then but fatigue is my biggest issue.

Good luck.... keep us posted.

💕Frances

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Hi Frances

Is there a limit to how many radiation treatments you can have for bone mets?

I had a single treatment for pain at the vertebra fracture site but when I asked if I could have more..my oncologist just shook her head and gave me a prescription for morphine capsules...which I don’t take as they make me weird and constipated..not a good combo I can assure you

Barb XX

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Barb

Sorry-just saw this. They cannot radiate same place/area where it was once done. I had radiation to T7,8; months ago found new spots T4,5,6,9. I wanted to do radiation again but the risks are too high in same area. My last mri showed all of those decreasing but found new in iliac and L2. I can do radiation to those if pain gets bad. Hope you are enjoying Italy and your new friend kitty♥️♥️♥️

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Hi Francesca I see you are on Faslodex do you have any weakening in your legs and or red blotches around knees?

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Hi Barb

No weakening but rashes yes. Doc think it’s from Ibrance not faslodex . I get red itchy rashes on my belly it goes away then will come out on my legs. I just take Benadryl. I do have to tell you that my doc is always questioning me about any weakness so I think you should tell your onc. Keep us posted💕

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Thank you for your reply. I told him I thought was from Faslodex and his reply was that chemo would have a lot worse side effects and is sending me for an MRI on my spine to check if any lesions I have there is leaning on a nerve but I do believe it’s the Faslodex don’t know which would be worse but go in a week for mri. Hope all is going well you.

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I have the same diagnosis, bone mets to spine, ribs, and one hip, about 1 year ago. When I was diagnosed I have two thoracic compression fractures that gave me pain at 10 out of a 10 scale. I had one series(10 treatments) of radiation to them which did wonders for them, but I still have rib and lower back pain. Radiation doesn’t help if a nerve isn’t involved and in all those places it’s just bone pain. I asked my doc if the pain in those places would ever get better and he said most likely not because of the damage to the bone. I’m on a Fentanyl patch with added Dilaudid when the pain gets worse. I find myself taking less Dilaudid then I used to so I’m not sure if I’m getting stronger or just used to the pain!

As far as getting used to this hanging over our heads, most of us have gotten to the point of treating this like a chronic disease. My last scan showed no evidence of disease at this point, but I’m scheduled for my next one this Thursday, so I’ll have some scan anxiety until the following Wednesday when I see my oncologist.

Getting your pain under control so you can live as normal of a life is key. You can’t live if you hurt too bad. Don’t be afraid to take pain medications or ask for stronger ones. They don’t expect MBC patients not to have pain and don’t blink an eyelid when we are on opioids. Hers hoping you get back to your new normal even though, as we have all found out, it isn’t really like our old normal.

My support structure has been good except a daughter-in-law that I’d like to change into a normal person instead of a self centered bitch! All of my friends know my diagnosis which is fine with me. They are concerned and ask how I’m doing but hare happy with an “everything is stable” kind of answer. I volunteer for a prom dress organization so they are happy to have me do what I can but don’t push me to do what I used to do. Your support structure needs to learn that the new normal isn’t the same. How old are the other adults in the house? If they are young adults I would set some rules and some consequences and stick to them. It’s hard to find the new path sometimes. Hugs to you.

Elaine

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Hello. Yes

I totally get what you’re saying. I’ve just nursed my partner to his death. He died two weeks ago. Apart from the sadness, fear, and the weight of all the worry we were both going through, his family did nothing to help me except for in the final week. Why. Because we both still looked well.

Well he did until his final week, but he was NOT well at all.

I still look well even though I’m on high doses of pain killers constantly. And if I go without..... heaven forbid.... I then feel the pain so bad. Similar to you. Sternum, ribs, thoracic spine and hips. Also some queries about lung and liver.

I feel for you so much. I don’t know what to say. There are no answers rom me. It has been hell.

At least now, I live alone, so I will tidy as I go and not have to tidy up after him. He was a delightfully messy bugger. I could have strangled him sometimes.

But even though my family care..... They seem also to be lulled into a false sense of security. So.... Every now and again, I remind my daughter.

She's pretty amazing, but living with her father who has brain tumours. And seizures all the time. So I don't want to worry her too much.

But it still doesn't hurt to be honest I think.

Good luck. And welcome

I'm a relatively new bee as well.

These people are all wonderful.

We are very lucky to have each other.

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I’m sorry about the loss of your partner. Taking care of someone with cancer and having it at the same time has had to be hard, especially with no help. Do something nice for yourself. Hugs. Elaine

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People always tell me “you look great” I want so badly to say well I feel awful! They think because you look good you are feeling fine🤷‍♀️

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🙃🙃🙃🙃👍

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Hi

I had breast cancer in 2013 and 2018 after a fall bone mets .

Yes I was scared and I felt life was so unfair

My medication is keeping me stable , and I still work.

I know someone who has had bone mets for 10 yrs !! She has pain now but lives a full life .X

I try to eat well keep active , and I feel a cure is around the corner x

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That is alot to deal with, sorry that you are going thru all of this. You will find good support here. It is hard for people even family to really understand what we go thru. So far I've started with acrpunture to help with my spine, some physical therapy, CBD oil. There are many other options. Keep in touch here, sending a virtual hug.

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I'm sorry that you have this lousy rotten cancer. But, the current thinking is that we don't generally die from bone mets. When the bisphosphonates (Zometa, Aredia) started being given by IV for bone mets, it was a real game changer. And now we also have Xgeva, too. Before these meds, bone mets would eventually cause numerous fractures and we'd become bed ridden and die from pneumonia. One thing to ask your onc is about physical limitations you should follow to protect your bones. The only limit I have been given is not to lift over 20 pounds, though 10 pounds is even better. The only over 10 pound things I lift now are our pets who are all under 20 pounds. I wasn't diagnosed until I already had "extensive" bone mets, in spine, rib, pelvis and shoulder blade. That was in March 2004, just over 15 years ago. At the time I was diagnosed, I had not yet retired. I'm an Episcopal priest and decided that once I had the full story on the cancer, I just had to tell my congregation. Transparency, honesty, all that open and direct stuff. So, one Sunday, midservice, I stood in the aisle near the front of the church and told over 200 people that I had breast cancer with bone mets and would be in treatment and would keep them posted about how I was doing. They insisted on laying hands on me and I gotta tell you that kneeling on the floor with that many people standing around, all touching one another, and what seemed like a hundred hands touching my back, head and shoulders, while they prayed for me, not just for the cancer to be contained, but for my health and well being, was an intense experience! And I learned very quickly how many women in the congregation had had breast cancer and how many others had had various other cancers. One always impeccably dressed professional woman confided in me privately that she too had metastatic breast cancer and gave me tips about where to get wigs, and other things I might need. She died about six weeks later and I officiated at her funeral and it felt like any other time I had officiated at the funeral or memorial service of somebody that I knew and cared about. I got thru her service much better than I had expected and have continued to take 3 steps forward and one or two steps back all the years I've been dealing with this cancer. My biggest issue is fatigue. I shower and dress every day but some days I don't do much besides walking our two dogs, feeding them and the cats, and doing some laundry. That doesn't feel like much compared to what I used to be able to accomplish. And our house is a mess. My husband does vacuum and wash the floors about twice a month, sometimes more often, and he does alot to help with meals when I don't feel up to it. I do still do almost all the grocery shopping and bill paying and getting info ready to go to the guy who prepares our yearly tax forms. For me, the first year was definitly the hardest emotionally. Things that helped alot, besides having a good family and good friends, were, not necessarily in this order; getting good news from the oncologist, meeting others with mbc, and finding an on-line support group. I am an education nut and read alot about mbc and went to conferences and got trained as a bc patient advocate. All that helped me feel like me. But that isn't for everyone. We are all unique and the cancer cells are unique, too. Generalities about treatment can be made, and are, but it's a step by step process for each of us. I am very fortunate to have easily controlled cancer cells that have responded well to hormonl treatment. More and more of us are living longer and longer and there are more treatment options than when I was diagnosed. I hope you will find what you need, both within yourself, and outside yourself to cope well but don't expect that to happen immediately. For most of us, it takes months, sometimes a couple of years. But it does happen. My prayers are with you, as they are with everybody here.

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I have extensive bone Mets and my cancer was found after nearly two years of hip pain that progressed to the point I couldn’t use that leg. I take Vimovo which is a naproxen based pain med with a built in stomach pill. It works well for bone pain. I also take hydromorphone cont which is slow release. Between the two of them my pain stays under control. People were all very “sorry” after my diagnosis but after a year people seem to have forgotten or think I am cured I guess

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Welcome to this wonderful group. I have extensive bone mets as well and was diagnosed a year ago de novo. I had horrific pain at the beginning and did require painkillers to function. Doing anything was painful. I found out that I had 2 rib fractures and a vertebrae fracture as well from the disease. After starting treatment(Ibrance/Letrozole/ Zometa) by the third month I started to feel ever so slightly better and about 7 months in I now only take extra strength Tylenol. I originally had a pulmonary embolism and will be on anticoagulants for life so can't take Ibuprofen(which was my preferred).

I'm sorry you are not getting the support you want. I chose not to tell anyone my diagnosis other than 2 former co-worker friends so I really can't really expect lots of support for my disease. I have a wonderful husband who has always been too good to me but now he is a more solid rock than any human should be. He does whatever needs to be done that I can't manage, accompanies me to all appointments and never ever complains. I am fortunate I know and even my oncologist has mentioned that it's too bad we can't clone him.

For many months post diagnosis I avoided people because I felt like crap and if I was seen they would have asked what was wrong. Constant pain and emotional turbulence of diagnosis is not easy to hide. Now that I feel so much better I can see people, go for lunch dates etc and hiding my true identity of MBC is not difficult....of course makeup doesn't go astray either. Good luck as you navigate this journey....it is always over my head that I have this but as I reached the one year point I can honestly say that it is not always on my mind. I am controlling it, not let it have more control than it already has and living my life as best I can and really enjoying the little things in life.....a sunny day, a good book, flowers etc. I hope you find the same in the future. It takes sometime. Take care.

Sandra

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Hi, I know exactly what you're talking about. Before I had my last scans, I was with some friends who said they were praying for me. One commented, well God has given you 2 years after being diagnosed stage 4. Some people just don't get it.

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Oh my gosh it's hard to believe that people can be so heartless. Been there unfortunately though.....last holiday season a former acquaintance of mine told me to make sure I enjoyed the holiday as it could be my last. Stunned me so I couldn't respond. I'm so sorry you had this experience and I hope it never happens to you again. Take care.

Sandra

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Thank you Sandra. The things we are told are amazing. I actually have people ask me when my treatments are going to end. I started simply saying. When I die. They don't know what to say.

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This made me laugh!! I'm definitely going to say that because I get asked that a lot. My boyfriend even said to me on the weekend after he finished a mountain bike race that next year when I'm better I can do it with him.. poor guy :-)

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Hi. ..I am the same as you ..2016..breast ..then back in August 2018..mets in chest .hips ..spine ..back strertum.. ..just about everywhere possible ..on Chemo treatments and Zometa injection monthly.. Chemo pill every day for21 daysand off week to get bloodwork and my injection.. Also haves pallative care pain Dr ..which scare the crap out off me. ..thought I was on my way .. But shegot me on pain meds..any meds I want she will give me ..lots off pain and discomfort ..also trying Cannabis oil. Not finding it very good .. But willing to give anything a try.. ..just got think positive and keep on go g forward..its scary when I get the pain ..my mind goes wondering if something else has started..but get scans every 4 months to checkmy organs and a bone scan..

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